Oh bub. One of the tricky things about birthdays is gifts (and the guilt I have about gift giving and birthdays and the frustration that I can’t really gift him what I want to, which is a life without NKH – anyway, it’s a wildly triggering time)
A lot of gifts just aren’t appropriate for our boy and finding things that work well for him (that aren’t a million pounds with the disability mark up) is tricky. We usually try find things our boy can easily play with, paired with an experience. The problem is we have most of the switch toys (and lasers, sensory kit, bells, singamals, foot baths, black light and neon visuals, buzzers etc etc etc). We have a gift list to make it easier for others wanting to purchase something for him, but we’re getting into the realm of we have everything, what else can we get for him? Because unlike other children, Mikaere isn’t going to age out of his development stage, into the next range of toys. He’s not going to become obsessed with the next whatever it is.
Still, sometimes it’s okay to fall back on an old favourite – the space blanket continues to be one of the best, it’s lightweight, bright and makes a great sound. Loads of smiles from Kai when we opened this! It was his first gift as a teeny babe, and it’s still such a winner. It cycles in and out of play, but there’s nothing like a brand new, fresh from the package space blanket.
#birthday#nonketotichyperglycinemia#nkh#nkhawareness#ifhnkh#metabolicdisorder#teamMikaere#glycineencephalopathy#nkhcansuckit
